The need for patient involvement in scientific research is crucial as there is a mismatch between what patients, clinicians, and researchers would want to see researched, and what is actually being researched. It is our aim to bridge this mismatch and open up the discussion between patients and clinicians to agree on priorities for future research.
Through our Patient-Powered Research Network (PPRN), we bring together clinicians, patients, and carers to identify and prioritize evidence uncertainties in sarcomas that could be answered by research.
Patient-centered care in sarcomas cannot be practiced without patients participating in their own health care decisions and in the research that informs such decisions. With this in mind, we launched a project to ask for and bring in the patient perspective and view on sarcoma research.
In Part 1 of our study, we assessed unanswered questions about sarcomas needed to drive patient-centered research.
Find out more in our publication.
Part 2 - available now in 12 languages - will help us prioritize your unanswered questions for future research and improved patient advocacy. Our goal is to identify the biggest challenges for sarcoma patients and where research and patient advocacy could make the most difference.
If you are:
- a person currently living with sarcoma (any type)
- a sarcoma survivor or person who once had sarcoma
- a caregiver for, or family member of, someone with sarcoma
- a bereaved carer or family member of someone who had sarcoma
- a patient advocate
... we want to hear from you - please fill out the survey now!